27 February, 2011

I have so much affection for Arnie and the New Kid by Nancy Carlson, who wrote a ton of books for kids about anthropomorphic animals. I wrote about this on tumblr but I just want to write about it again because it ties into what I've written about disabled queerness. Also, it's incredibly cute.

Arnie is a non-disabled cat who is quick to make fun of Phillip, a dog who uses a wheelchair. (I loved writing this sentence.) One day, Arnie is shambling around pretending to be Phillip, holding his arms up to his chest or whatever in an attempt to look disabled, and instead of getting an Oscar or an Academy Award like if he was a human, he falls down the stairs and injures his leg, wrist, and tail. Cut to Arnie wearing an adorable brace on his tail, using crutches, and needing much more help with things than Phillip ever did.

Like Harry Potter, Phillip has the social grace of a saint and befriends Arnie even though Arnie was a dick to him. Arnie and Phillip start spending all their time together doing the things Phillip likes to do--like playing video games, trading baseball cards, and birdwatching. (I especially love the page that shows them in a theater, watching a horror movie through their paws.) Of course, Arnie recovers from his injuries and goes to play baseball, which was one of the things he originally bullied Phillip for not being able to do. Phillip is worried that their friendship is over, but then Arnie says that Phillip will come along and be the coach.

I've read a review criticizing this book for exactly the reason I like it: Phillip is a loser who needs Arnie's help to be included socially. Well, Phillip is not a loser in my estimation, but he isn't so incredibly cool that he can overcome the stigma of disability, especially when Arnie is constantly drawing attention to everything Phillip can't do. What accounts for this failure of character? PHILLIP IS AN ELEMENTARY SCHOOL KID. Not every kid can go into a new school and have everyone be staring at them and bullying them, and deal with that competently and make a lot of friends.

Phillip is just an ordinary, nerdy kid--and by Arnie's standards, he really is a loser. He takes longer to eat, can't race, and can't play baseball. Basically, Phillip is slow, which dooms him not to be taken seriously by many of the kids.

But then, when Arnie is injured, we learn that Phillip has all these other interests and abilities that don't relate to whether he can walk or perform complex tasks with his hands. Arnie has a great time when he's temporarily disabled, and this, I think, is what keeps Arnie and the New Kid from being a book about charity or pity. Arnie doesn't think, "Wow, being disabled is awful, I should be nicer to Phillip." He learns that Phillip is actually a fun person and a good friend. He learns that his conception of what makes someone a loser was wrong.

When Arnie asks Phillip to be his coach, yes, he is making an effort to include him and maybe Arnie's actions will be the key to Phillip's social success. But Arnie makes the effort because he's grateful to Phillip and likes spending time with him, not because it's the nice thing to do. Arnie's decision is ultimately not about his own good qualities, but Phillip's.

I actually feel really frustrated by the idea that it's offensive to portray a disabled character needing help or being socially isolated. Phillip is not portrayed as weak or unpleasant at all; he's just up against a lot of ableism which, being a child, he can't handle all by himself. If Phillip was some kind of amazing superdog who could play baseball in his wheelchair and advocate for himself to be included in the games and be such an all-around badass that no one even noticed he was disabled, that would be an incredibly unfair image to show to kids. Most disabled kids cannot be that and shouldn't be made to feel that that is what they have to be in order to succeed. Non-disabled kids shouldn't be told that instead of adjusting their ideas of what you can do with a friend, or what qualities make someone cool, they can just wait for a supercrip who forces his way into their world and adjusts to their standards. Because they will be waiting a long time and, while they wait, some of them will be bullying ordinary disabled kids.

I'm thinking of making a series of posts about disability-related children's books, which would hopefully involve a lot of DISCUSSION! I'm wondering if anyone else read this book and what they thought of it. Obviously I am not a wheelchair user so I may have missed something really egregious. (One problem I have with the book is that Phillip obviously needs an aide and doesn't have one, so the nicer kids are always doing stuff for him. Really, really not a good message to send.)

Image description: cover of the book Arnie and the New Kid. On the left side of the picture, Phillip, a yellow dog wearing a t-shirt and jeans, sits in a wheelchair. On the right side, Arnie, a gray cat wearing glasses, black pants, and a shirt with mice on it, is standing and holding some books. Arnie is practically looming over Phillip with a mean look on his face, and Phillip looks scared.

26 February, 2011

I'm writing a very long post about person-first language and the fact that, although I prefer it, I think it's pretty annoying when people (usually non-disabled people) go around demanding that other people use it as though it's some kind of immediate key to respecting people with disabilities. In my opinion, all the arguments people use to try to prove that person-first language is inherently more accurate and respectful just end up making them sound like assholes. If I am really a "person first and a disability second," what does that mean? Does that mean people are supposed to be looking at a version of me where all the disabled parts of me have been scooped out and are floating along somewhere behind me? How are people supposed to relate to me when I have huge chunks missing? What kind of pressure does this put on me to avoid showing the parts of me that somehow aren't supposed to be part of my "personhood," and are supposed to be things I can detach?

I totally love person-first language and use it all the time while NOT feeling that it in any way should be taken literally when interacting with disabled people. This is why I have such immense love for the What Do You Call Me? page on the National Organization for Albinism and Hypopigmentation website. While it has a few instances of "person first and albinism second," the bulk of the page is devoted to talking about the pop culture image of an "albino," the way the word may be used to bully people, and, most importantly, what actual people with albinism feel about the word. Not surprisingly, opinions are mixed--some people see it as neutral, some people "reclaim" it, and some people feel uncomfortable or hurt when it is applied to them. After some discussion, the page arrives at this sort-of-conclusion:

To most in the albinism community, the term “person with albinism” will always be a kinder, gentler, less shocking term. Regardless of the context, the word “albino” can sometimes be an ugly, jolting word to many, especially when heard unexpectedly.

So, basically, it sounds better and doesn't call up a bunch of stereotypes. THANK YOU NOAH. It isn't necessary to imply that disability is some gross thing that has to be ignored, just to make the point that you shouldn't run around calling people a word that has a lot of stigma because it might make them feel bad.

For me, person-first language is about how things sound and feelings and implications; it's not right in any objective way, because that would be ridiculous.

22 February, 2011

I was at my college's queer/faith group today and felt kind of bad because I said something like, "I'm not from a religious background and I came to God through being queer so it's really weird for me when people see gay + Christian and imagine that I have some sort of conflict or that this has caused trauma for me." (Or even imagine that I realized those things in the opposite order from when I actually did.)

This seems really privileged as if I think that the reason people see gay + Christian and associate that with a really terrible set of experiences is just some anti-religion bias. I mean, the people who've said this to me are atheists so I do feel a little bit like they're stereotyping Christianity and religion in general and failing to understand that at its core there's nothing that would inherently be my enemy as a queer person. And I kind of like expressing how much that isn't my experience because my type of experience is so rarely expressed.

At the same time, it's a very rare experience. I grew up with liberal atheist parents and I go to a college that is primarily liberal atheist--that is a tremendous privilege for a gay person. So for me to be like, "Yeah, God and I are buddies, why wouldn't we be?" is kind of a dick move. It's actually kind of like the way I feel about queer people who have overcome certain things, that I can't overcome as easily due to being disabled, and act like all queer people can overcome those things.

I know a lot of people's experience is one of religion being forced on them. But mine is one of being expected not to be religious and even feeling uncomfortable as a religious person in the spaces I tend to be in, and once having someone compare the fact that I believe in God to unusual stuff I do that's related to my disability. Which is really not cool.

This also applies to disability. My disability has been (cognitively and emotionally) a huge barrier to my ability to participate in things like church--largely because church is unfamiliar. So I'm very jealous of my liberal atheist and otherwise non-Christian* friends who had a sort of upbringing where they were brought to church, confirmed, etc., and the fact that they went away from that wasn't such a big deal to their families but it was just kind of how they did things as they were growing up. Because that structure would have been really important and my life would be totally different if I'd had it. I'm really lucky that my dad is as supportive as he is or I would never have (finally) been baptized and would have even less experience going to church than I do.

*(not that atheist=non-Christian but I'm thinking of people who are agnostic or "spiritual but not religious"--not people who have converted to another religion or heavily identify as anything.)

When I was a kid I had a babysitter who was Catholic and would pray with me when she put me to bed, against my parents' wishes. I'm extremely grateful for this because it gave me familiarity with prayer and the knowledge that it was an option. I still pray the way she taught me, every night. But I know what most atheists, and even many Christians, would think of her decision. And I don't know how to reconcile that with my gratitude.

I'm looking for a job next year and I'm interested in a particular facility for kids and teenagers with disabilities, which is Christian. It would be really wonderful for me to work in an environment that's Christian and I do relate being staff to being Christian (I don't mean this the way it probably sounds, but it's a huge other thing to talk about--it has nothing to do with me being better than the people I serve). But I feel creeped out also because, while they write on their website that the people they serve have a choice about being Christian or going to church, religious education, etc., they use the word "encourage."

In my experience, some people with disabilities have been taught to be compliant to the extent that if you "encourage" them to do something, or even ask them if they want to do something, they perceive it as an order.

I mean, I also have known people--and actually, this doesn't just mean more severely disabled people who I've been staff for, this also includes me, and maybe this includes me more than anything in terms of religion--who have a very hard time saying they want to do something, asking to do something, even saying "yes." My camper Stephen from this summer would say no to everything, including things he had previously shown he liked; after bringing up the subject again and again, you might be able to find out whether he really didn't want to. Sometimes this didn't work and you had to put him in a position where he had to make an effort to opt out, instead of to opt in--this was generally how you found out for sure what he really wanted.

I'm not saying this in terms of the facility, because that word encourage really does bother me and I'm not applying there until I can figure out what it means. But when it comes to religion, I am a great deal like Stephen. Which is very confusing for me and which, I'm afraid, often results in me saying things that ignore the very nonconsensual and/or negative history that a lot of people from my communities have with religion.

21 February, 2011

I think that because it’s primarily used to indicate stuff like extra space, shorter distances, and seating, it isn’t as vital that it be inclusive of mind disabilities. To my knowledge the people who are most hurt by the current symbol (in terms of the attitudes it promotes) are people who need those things, but don’t use mobility aids, who can for example be pressured to stand up and give the “disabled seats” to someone else. I remember there being a few posts on FWD/Forward by contributors with fatigue, pain, and mobility disabilities who have experienced this. Obviously this is challenging to fix because it’s hard to make a picture that immediately communicates CFS/ME or something like that. And I also think that because the current symbol is so familiar, changing it to something like the open door would create a lot of problems.

So I think that the best symbol would be something like this (except done by someone who can actually draw):

This is much cheesier than the cool-looking person pushing their wheelchair, but I think it could work because it:

1. keeps the original symbol that people are familiar with, so they know immediately that it’s a “disabled access” sign (sorry the wheelchair user looks so weird, I was trying to point their hand so they could be reaching for their joystick but they just ended up looking depressed)

2. shows a person with pain in their back and leg, which brings in the idea of people who don’t use mobility aids and reminds the viewer that such people might also be among those who need the seats, parking spots, etc.

3. shows people with different kinds of impairments to remind the viewer that there is more than one disability that would cause someone to need these things, and hopefully suggest that there are even more disabilities than the ones portrayed here

#3 might be expecting too much of people, but even if people look at someone in the disabled seats and think “oh, I don’t see any mobility aids, they must have a bad knee,” that would still improve how that person is treated.

16 February, 2011

sometimes it feels like it would be inappropriate to speak up. I basically live on the Skins lj community right now--actually can't remember if that's what I'm thinking about in particular, but just general fandom/pop culture forums. People use the r-word or just talk about disability in a way I don't like. I think of how I don't like it--should I say something? I end up thinking, that would be weird, this is just a casual pop culture environment, I don't really know any of these people.
But the Skins fandom is heavily queer--I don't hesitate to speak up when I think something is heterosexist/homophobic or even cissexist/transphobic.
This is because I know someone will write a comment under mine saying "+1," "iawtc," "this." Whereas if I say something about ableism, it may just be awkward. Someone may be annoyed or just not say anything.
It's okay to make this decision to avoid awkwardness. I have that right. But I've noticed how instead of just thinking, "I don't want to say this because of the reaction," I actually think, "Oh don't be so serious"--but really, I feel perfectly fine being serious about things I know it's safe to be serious about.

me: I don't know
I just think my life is a lot better since I stopped thinking of myself as being "socially impaired" or whatever
Liam: yeah
i mean its just a word
me: like, sometimes I make a joke that someone doesn't get or something, maybe it's because I'm different, but it's an interaction between the two of us, maybe we don't fit
Liam: yeah for sure
me: like, I used to just feel really embarrassed like every time i made a joke someone didn't get or something
like "oh it's my autism making me say stupid things"
Liam: i mean i find it way easier to hang out with you than a lot of other people
me: but I just think that's dumb and I feel like other people can think "that person didn't get my sense of humor" and they don't have to take it personally
dude I don't know do you find me to be like "simple" or "dense"? it's okay if you do
I just wondered
Liam: no
i think you are really smart
maybe child-like
i mean you get a lot more excited about things than most people
i think you also just approach things in general a little differently
but in a good way
me: I mean, that's cool
I don't mind being different. I just used to always mind the idea that I like...was supposed to be unaware of what was going on because of my disability
Liam: i mean thats totally not fair
everyone sees things a little differently
i mean i cant see red and green
me: aww
Liam: i think everyone is different and its easy to compare yourself to other people
i mean i always feel like im really slow
me: well I think I'm going to come to the library so I can type up my writing project
Liam: and bad at writing
me: it's easier to prop my notebook up on a desktop
Liam: cool
we are in a study room
me: oh
where?
wait are there desktops?
I guess I won't see you
:(

I'm thinking of writing some Skins recaps because a)there seem to be no recaps of gen 1, which is a heartbreak, b)there aren't that many sites recapping gen 3 because two of the three sites that recapped gen 2 are lesbian sites, c)no one who recaps Skins writes about disability very well, which is frustrating because d)there are a few really good portrayals, and a lot more that are worth discussing.

I don't know when I will do this and I'll probably just write on whichever episodes I feel like writing about. I'm also not sure whether I should do the recaps here or on Bad Brains Wearing Clothes (Zoe is that legit? At all?).

Some thoughts: (SPOILERS)

1. JJ/Emily isn't offensive to me as a lesbian. Should it be offensive to me as an Autistic person?
2. 1x02=awesome. But what are Cassie's food issues like after this? Do they immediately go away or are there signs of them still being around later?
3. 2x09: "I stopped eating and everyone had to do what I said. It was the happiest time of my life." Is this a)a retcon by the writers, b)a retcon by Cassie, c)actually supported by series 1?
4. Why 4x06 sucks both because of the series arc, and because it unnecessarily brings in disability issues and then doesn't address them properly.
5. Did Sketch turn evil because she has to OMG physically support her mom?
6. Does Cassie actually change dramatically, or did we just read her wrong because of her scripts?
7. What would have been a better way to introduce and portray Effy's bad brains?
8. True or false: if someone can't get an erection, you can't have sex or a relationship with them.
9. Overprotective parents and their relationship to real or imaginary disabilities--Cadie, JJ, and Pandora. Also, what is lost in the transition from Cassie to Cadie.
10. Terrible doctors and their relationship to real or imaginary disabilities--Cassie, Cadie, JJ, and Effy.
11. Why is Mini so awesome?
12. Josh. (I'm referring to both the character, and the only person who will probably read these recaps.)

15 February, 2011

Maybe you recall I am writing a book where I attempt to parody and reclaim a certain horror/pulp/gothic fiction trope where some or all of the following qualities:breaking gender norms
same-sex-attraction
oddness, illness, and/or disability
childhood trauma
evil
depression
obsessive, unhealthy love
are treated as being related to each other and causing each other.

EG's mom killed EG's dad when EG was very little and was never caught. EG grew up with her mom in a very cold and isolated unit. Everything was super gothic, down to their house and their town, so EG's experience of life is very gothic as well. (I'm using initials because I don't like EG's current name.)

EG sits in her dad's study all the time and reads all her dad's favorite books and does all the things he liked to do and wear his clothes. When she is about 11, she begins to be sexually attracted to girls, which she sees as a manifestation of her father's spirit inside her. EG feels the way about her dad's ghost that some people feel about the Holy Spirit--it is working in her and changing her to make her more like him so she can stay close to him her whole life. So being attracted to girls is kind of like being able to speak in tongues.

Of course it's also a difficult and frustrating gift because EG still looks like EG and is treated as a girl when she goes out into the world, but she is her dad.

One reason I like this idea is because the narrative of lesbians and masculine women is always a narrative about hate--lesbians hate men, hate society, hate femininity. It's always an escape and rejection. Whereas EG resembles the most cliched lesbian characters but her narrative is one of love and seeking home. The difference between wearing men's clothes and wearing a particular man's clothes.

13 February, 2011

I'm getting together the questions for my passing project survey, and was wondering if anyone had any ideas for how to organize the questions or write them more clearly. My plan is to ask questions fairly broadly and loosely, but these are some areas I'm thinking of covering. (See the possible passing project tag for some posts I wrote when I was originally thinking up this project.)

1. Did you start passing on purpose? If so, when and how did you make the decision?

2. What are some things about you that might give you away, which you're very conscious of? Do you feel something's wrong with your voice? The way you walk? The way you hold your hands? The words you use? Your history?

3. If you are still passing (to some extent, in certain environments, or all the time) can you explain your reasons for doing so? What would be the consequences of not passing?

4. If you belong to one or more other minority groups (I'll probably include a list of examples of what this could mean), does this have anything to do with how and why you started passing? For example, did you feel that belonging to one minority was isolating enough without also being on the autism spectrum? Did you feel that people might be convinced to accept one, but not more than one? Is this because of the number of minority identities, or because some minority identities might be more easily accepted than others?

5. If you belong to a minority group which you don't or can't hide your membership in, do you think this affects your ability to pass? An example would be a passing Autistic person who is the only black student in his high school, who starts to be stereotyped as "the black student," and therefore is less likely to be read as Autistic. Or maybe he becomes highly visible because he is the only black student, and must work harder to pass. Etc.

6. Have you ever made yourself more visibly different in order to pass? For example, you might dress in an unusual way to distract from the more subtle ways in which you are different. Or, you might try to take on a class clown or subcultural persona so that everything about you that is different will be perceived as part of that persona.

7. Have you ever made yourself more visibly normal in order to pass? What did you do?

8. This question sounds like a bad poem, but bear with me. Have you ever felt attracted to the idea of becoming more visibly different? For example, did you want to injure yourself in a way that would change your appearance? Did you want to tell a dramatic lie about yourself, get a lot of body modifications, or drastically change your weight? Etc.

9. Have you ever had someone notice signs of your autism, but interpret it as indicating something unrelated to autism? For example, have people interpreted you as being drunk or high when you're not, or being upset when you're not? How does this make you feel? Have you ever used these assumptions as part of your passing system?

10. Have you ever been in a situation where someone else was seen as disabled, or as being on the spectrum in particular, but you were assumed to be "normal"? For example if you were a counselor at a summer camp for kids with autism, and the counselor culture assumed that none of the counselors had autism. Or if you're a relative of a more visibly or severely disabled person, and people put you in the position of "non-disabled relative of a disabled person." Or if you're taking a psychology, education, or disability studies course where you talk about people with developmental disabilities, with the assumption that no one in the class has such a disability. Is this upsetting for you in any way? On the other hand, does it make you feel more secure about your ability to pass because someone else is taking the attention off you? Do you ever put yourself in these situations on purpose, because you can pass better?

11. Do you ever say no to things you want to do, because you are passing? If so, what are some of those things?

12. Do you ever limit potential friendships or relationships, because you are passing? For example, being reluctant to spend a whole day with someone you really like, because you know you couldn't act normal for a whole day.

13. What do you think other people's reactions to you are? This question covers both what you think intellectually, and what you feel. For example, someone might feel that everyone is judging them and thinks they're a loser, when they know that's actually not true.

14. How do you feel about sexual and romantic acts (including solitary acts like masturbation, and non-genital acts like kissing, holding hands, and roleplaying)? How do you feel about sexual and romantic relationships?

15. How do you feel about food?

16. How do you feel about self-injury, and injury/pain in general (for example, getting in a fistfight, getting shots, or going to the dentist)?

17. How much do you feel depressed or experience anxiety or dissociation (feelings that aspects of your life aren't real or that you are someone else)? If you experience those things, what does it feel like?

18. Have you ever been in a "covering" situation--that is, a situation where everyone knows you're on the autism spectrum, but you still have to perform. For example, you might have to act in a certain way to offset people's expectations about what someone with autism is like. Or you might have to express gratitude for being given a particular job, friendship, relationship, etc., despite your autism.

19. Do you identify as disabled? Do you identify as A/autistic? Why or why not? What do you think it would mean (or does mean) for you to identify with either or both of those terms?

20. Have you ever been told, by a professional or someone else, that you have recovered from your autism or that you don't have autism anymore?

21. Do you feel like something is wrong with your face? Why or why not?

I find myself thinking that I should cut up these questions into thematic clusters of very short specific questions, because these questions seem very overwhelming to me the way they're written now and I can imagine people would have trouble answering them. Also...they're such leading questions a lot of them. But it's not a scientific study so I don't know if I really feel that bad about that.

Also (semi-related) I made a formspring which I feel like might make me more accessible both for people who are taking the survey, and in general. I made that big post about how I wanted to get in contact with people and then I actually get overwhelmed by or forget some of the emails I receive, so this might be a better way to do that because I can answer people more impulsively and not have to remember for a long period of time.

10 February, 2011

First off I should probably mention I'm going to try to be posting here less. I'm doing a massive amount of stuff in school and if I don't allow myself to be sucked in by the material I'll be really screwed. And anti-ableism is unfortunately able to suck me in again and again; I can think of one class I've been invested in since I started writing this blog.

I made another very long LOVE-NOS post called Some common fallacies and rebuttals, starring the Harder Fallacy, the Uncomfortable Fallacy, and all the other fallacies you've grown to know and love if you're disabled and you sometimes open your mouth (or whatever you use to talk) and express your own opinions.

Anyway, I figured a good way to transition myself into my medieval mysticism seminar is by talking about the experience of being grossed out. Like some mystics, I believe being grossed out and caving in to that is wrong.

There's a particular animal that I'm going to refrain from naming here, but a lot of people are scared of it, including me. I was recently reading the blog of someone who had a picture of the animal in question, and I flipped out. This has actually happened to me before with the same animal, except it was on my LiveJournal friends list so I immediately slammed my computer shut, opened it again with my eyes half closed, closed the browser, opened LiveJournal again, and defriended the community that had inexplicably decided to make a macro of Jonathan Groff's head on this animal.

I can't predict exactly what will happen to me the moment I die, but the only thing I can imagine is that God will be there in the form of that animal, and I won't be able to move forward until I can love God in that shape.

A lot of people are grossed out by a lot of things. The idea that we are grossed out by things because they are bad is the uncomfortable fallacy ("confusing a feeling with a fact"). So with that in mind, I'd like to talk to you about smearing feces.

In my fallacies post, I discussed the use of shock in the Shocking Behavior Fallacy and Undisabling Fallacies--the first is, "You can't tell me that the way I treat Ralph is wrong, because he bangs his head," and the second is, "You don't have the same disability as Ralph, because he bangs his head." Basically you introduce something shocking to try to distract from the fact that what you said doesn't make any sense.

I kept rewriting the examples for these fallacies, because when people use these fallacies in real life, it is so common for the shocking behavior to be something related to shit--usually, smearing it or playing with it. However, whenever I used "smearing feces" as the behavior in my examples, I ended up wanting to write a really long aside discussing how much it disturbs me when family members or professionals use someone's behavior as a gross-out tactic to try to keep you from identifying with them and defending them; and how much it disturbs me when that works. So I kept the feces references to a minimum, pretty much, and figured I would save that for another post, which is this post.

It's not as embarrassing when headbanging or biting or something works as a tactic to silence you--because it's not quite as low a tactic. When someone says, "you don't get to talk about autism, my kid hurts herself really badly," you might experience empathy for the kid; you might experience that pain for a second, imagine what it is like to hit your head on the side of a bathtub, and if it's never happened to you maybe you end up thinking--"I shouldn't talk about autism. I don't know what that kid feels like. I should leave this to someone else, who knows better."

I do think this is being taken in by a fallacy, for reasons I discussed in the fallacies post; but maybe it's a failure of reacting with compassion and not knowing how to use that compassion, of being afraid to intrude on the reality of someone who hits her head in the bathtub--of feeling like you've claimed an experience that isn't yours, by saying that you two belong to the same general group.

The shit thing, on the other hand.

No one who uses "smearing feces" in a Shocking Behavior or Undisabling Fallacy is aiming for the person they're arguing with to have empathy for the kid; and no one's who's taken in by "smearing feces" is having empathy for the kid. Smearing feces is an upsetting idea not in the way that self-injury is--it hurts the person doing it--but because you get grossed out thinking about the person who has to clean it up.

So when someone tries to shut you up by saying, "You don't have it as bad as my kid, my kid smears feces," they're actually not saying, "You don't have it as bad as my kid," they're saying, "You don't have it as bad as me because I have to be related to someone who did something gross." They're not saying, "You don't get to talk because you don't have it as bad as my kid," they're saying what...well, what a lot of them are saying deep down--"You don't get to talk because you are a kid (i.e. disabled), and we are talking about non-disabled people here." This proves why no matter how disabled someone is, they are never allowed to talk.

If we're having a contest, yes, I've been direct support staff, shit is not a thing of beauty and a joy forever. But I don't think it really needs to be put on this ultimate anti-pedestal of THE WORST THING. ANYONE COULD EVER TOUCH. IN THE WORLD, where you hear "plays with shit," "smears shit," "wears diapers," "has accidents," and that can actually put you into a tailspin of "I cannot relate to the person who does that and I cannot judge the person who has to clean it up." You can relate to everyone, and you are allowed to state when someone is being abusive, has committed a murder, or simply is saying something that you don't think is true.

08 February, 2011

WE LOSE. (Actually I lose every time I remember that I don't look like Hannah Murray.)

The American Skins remake is pretty bad, but the last episode was all right. If I saw it on its own I probably wouldn't think it was that bad. However, since I'm familiar with the original Skins the episode illustrated something that I think is problematic about portrayals of the less visible mind disabilities (say psychiatric disabilities, learning disabilities, and verbal autism) on TV and in movies. As I see it, it can go two ways.

1. the person has a very obvious disability, correctly diagnosed by professionals who give the person exactly the right kind of help. Very medical model--the disability is the problem. Everyone else (parents, friends, etc.) wants to help and is super helpful all the time. Usually this character appears in a Lifetime movie or is a minor/guest character.

2. the person is diagnosed with a disability and given treatment by professionals who seem kind of incompetent. It seems like parents, friends, etc. are treating the person in an overprotective or disrespectful way because of the diagnosis. Maybe the person gets put on meds that have some bad effects. Amanda gets excited--is this a three-dimensional, realistic portrayal of disability? Probably not. The person, it's implied, doesn't really have a disability at all. Their parents are just overprotective.

(I won't go into the implications of this dichotomy but I think something similar is explored in the FWD/Forward posts about TV shows, movies, and books, where people without psychiatric disabilities end up in institutions.)

This ubiquity of these two portrayals can be observed by reading recaps and discussion threads about my beloved Skins 3x07. To me, the issues in the episode are twofold: a)JJ has autism and can't handle some stuff that's going on, b)his mom, friends, and psychiatrist are all dicks. But I always see people talking about the episode this way:

"I feel so bad for JJ's mom, his condition has had a big effect on her. It's so sad that he has to take so much medication to control it. He's so lucky he has such nice friends! Emily was so nice to help JJ! It was great at the end of the episode when JJ's mom was happy because she saw how Emily was helping JJ become more normal and get better at socializing."

Or this way:

"JJ is starting to realize that he was misdiagnosed and shouldn't freak out about things because he's normal."

In Generation One, the one that's currently being remade in the US, there was a disabled main character too. Her name was Cassie and I have to make a Bad Brains Wearing Clothes post about her because she basically got me started wearing lipstick for the first time and she has perfect sunglasses and a perfect jacket and perfect hair. Cassie had anorexia and was suicidal, but she was also super cool and funny; and, as with JJ, she was surrounded by douchebags but this wasn't set up as being the reason she seemed disabled.

Cadie, the Cassie character in the American Skins remake, is probably the only character in the remake I especially like. Her episode wasn't that bad. But listen to this! She's not anorexic anymore. She's just on a bunch of medication and one of her doctors said she has OCD but it kind of seems like Cadie is faking it to get pills? And her mom is also a huge bitch who doesn't think anything Cadie does is okay, which could be how she ended up going to doctors in the first place. Basically, in the transfer from UK to US, Cassie has changed from a character who was actually disabled, but wasn't just disabled, to a character who might not be disabled at all.

06 February, 2011

(I was going to write an actual post about this, but I basically summarized the entire planned post when I was talking to my friend and I think the summary works equally well to get across what I have to say. This is slightly an announcement about the direction of this blog--or maybe it's an announcement that I'm getting back on track, after veering in some fucked-up directions--but I also just think it's an interesting problem on its own merits. I've edited the conversation to remove my friend's comments, and to avoid doing what I am, at this point, resolving not to do.)

me: well I feel like I've known a few people who like
11:07 PM
will get in a really depressive state and they can't separate the depression from what's true
so like for example they'll basically go on a crusade against some thing or person they see as being bad
and for people outside of it it's kind of obvious, like "wow, no matter what happened, this person is not really experiencing reality"
11:09 PM
me: well, so my blog becomes the narrative that I tell myself about my life, if I write in it a lot
me: and at periods when I'm in really bad emotional states, I often have this narrative going really loud in my head and when it's really bad the narrative becomes less and less connected to reality
11:13 PM
now, I guess I feel that what the narrative has been lately is basically probably true in some sense
"I'm disabled, people don't read me as disabled, people don't respect disabled people, people expect things of me that I cannot do, this is bad, etc."
and it's okay for me to write about this obviously
but the problem is when I get into some sort of state
11:14 PM
and I don't think I have a mood disorder, but I guess it's also pretty normal for a lot of people with autism that we just get into a state when something is overwhelming for whatever reason, and it just sort of takes over everything and it's not that different from a depressive or manic episode
11:15 PM
me: and, you know, I think my states are probably who I am and would probably happen no matter what--although they're affected by my stress level and other stuff, I definitely think they've been much worse this year and much harder to transition out of. I mean, some of the things that put me into states are really not fair and I'm justifiably angry about them, but that doesn't mean that I'm in my right mind when I'm in the states.
anyway I think the problem is
I get in these states and the narration in the states is like
11:16 PM
"everything is so hard, I'm a waste of space, my autism is like this giant pile of shit I'm carrying around, I have a horrible brain, I want to [blah blah blah self-injury blah blah], if I just [blah blah blah self-injury blah blah] everyone would believe I was really disabled and maybe someone would use what happened to make a point about ableism which would be the most useful thing I could do"
11:17 PM
me: and on the small scale, this is so bad I'm totally worthless I'm going to [blah blah blah self-injury blah blah]
and all of this, is like
me being in a state
yes, probably the opinions behind what I'm thinking are things I would stand behind when I'm feeling all right
but the whole thing is like
not really completely attached at the hip to reality
HOWEVER
11:18 PM
I think sometimes maybe because I want support but also because my states superficially resemble stuff that I write about when I am in my right mind
I end up writing on my blog about how I want to [blah blah blah self-injury blah blah] or something, because in the state it looks to me like it fits in with my other posts. when I'm in that state, it feels like hurting myself would be a political act.
but...making those posts is not a smart or okay thing to do.
even if I think I'm doing it to make a point or something
11:19 PM
what I'm really doing is letting my states take over completely
and instead of just understanding it's a state it's kind of awful maybe I can distract myself or talk to someone or maybe I just need to pray or sleep it off, like I start believing in the validity of the state
even when the state is like, I need to hurt myself, my life is so sad there's nothing good in it
11:20 PM
um...so yeah I'm not going to write about this kind of stuff on my blog anymore. and I want to write a post basically covering this because I think it's interesting and may be helpful to other people who have states
although I do understand the irony of writing a post about this when I just said I wasn't going to post these really intense emotional things.

Basically it's a LOVE-NOS post showcasing the assumption mn=p, and how it's applied by professionals and laypeople to people with disabilities. I tried to use as many examples as I could think of to show how mn=p really knows no disability and can manifest at a lot of different levels, from seemingly innocuous to obviously vicious and abusive.

You should read it because writing it took over my life. You should also read LOVE-NOS in general because Julia wrote some really beautiful things that I can't take the time to link to individually because I haven't eaten anything in a really long time and all I can think about is food. But anyway, go over there please.

02 February, 2011

(kind of worry that this post is developing an Oppression Olympics tone, which is so not my intent, to say that one group of disabled people has it worse than another group--I'm just trying to articulate what I'm feeling and why it's different from what people with other disabilities might feel.)

This is hard. I identify as disabled, or Autistic. Or developmentally disabled, person with autism, , or a headcrip (thanks Samantha). Also sometimes a bad brains, but let's stick to what I'm saying in a better mood. Or let's stick to what I say when I'm trying to be objective, which is: autism. ASD.

Something that's really hard about identifying as disabled and having autism, that I don't think is an aspect of being blind or having cerebral palsy or being deaf, is the feeling that the base of your identity is subjective or could be taken away at any time. Like--identity comes in two parts, the objective fact and the actual identity. You're deaf or hard-of-hearing and then you're also Deaf. Or you have a physical disability and then disabled or PWD or crip can become one of the important things about you.

Anyone can argue with the idea of disability identity or indeed any kind of identity, but generally they can't argue that someone who has cerebral palsy and identifies as a "crip" doesn't have cerebral palsy. They can argue with the word crip and the idea behind it, but they can't deny the CP; or if they do because it's not that obvious from the person's physicality, I can't imagine it can shake you up as much. Because...if you have CP, you know you have it.

Whereas the idea of autism is this incredibly odd thing that almost no one can live down to in real life. I always hear (and read) doctors saying things like, "this kid had an autism diagnosis but he hugs his family," and instead of the response being, maybe I had the wrong idea about autism, it's always, "so many kids are misdiagnosed with autism!" (and this is not a new thing, I read it in a book that's 15 years old). And, technically, they have the authority to say that, and so many of them do, so it's like, you objectively have autism only as long as a particular doctor said it, but you're just waiting until the next minute when another doctor will say you don't. Because all these things--not necessarily accomplishments but feelings, qualities, where your eyes go--will mean that to some person or other.

The doctor I went to recently to get learning tests didn't have particular experience with autism, and I didn't think that would be a big issue for me. I did want a rediagnosis of PDD-NOS, which I was able to badger him into, but I mainly just cared about knowing what my learning and thinking problems are and I didn't really care if he called it ASD or NVLD or ADHD.

But, you know, he called it the last two, and it made the process of talking to him really strange. We talked a lot about personal stuff before the testing started, and obviously I mention I have autism when I talk about myself; it's part of my life, and sometimes I say, "I also think this might be going on, because I talked to some of my friends who also have autism, and they have also experienced this..." The doctor, while very nice and very good at thinking about learning disabilities, obviously didn't know anything about autism--I'm not being a bitch, it was just clear that it wasn't his field. So there would be this little record-scratching sound whenever I said the word.

"You keep saying you have autism. Who told you that?"
"Oh, this isn't about autism..."
"Autism? I thought we decided to throw that out."

Like, I was seriously at a point of wanting to be like, "Whenever I say I have autism, just pretend I'm saying I'm Catholic or I have arthritis or I have dual citizenship or I'm a twin. It's not up for debate, it's part of my life."*

It just is really weird to have the base of one of your identities be something that everyone always thinks they can argue the legitimacy of. The untoward lady helped me about this a little bit by saying that maybe the most objective way to define autism is by whether people who identify as having it recognize it in each other. And I guess we are the people who have thought about it the most and lived with it the longest. But we can still never prove it even if we know it ourselves, and that's something that makes us different from most other people who identify with disability culture, I think.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.